He is exactly who he is supposed to be.
On Sunday, we attended the "Mercy Me/Tenth Avenue North" concert. It was, notably, my son's first (non-classical) concert. Another first. Another stepping stone. We sat way up high in the nosebleed seats. The only ones I could afford. An usher pushed aside the curtains and led us to our seats. He held my hand, as he usually does when we're out and about and I felt his grip tighten when he saw how very high up we were and how very low the guardrail was. I kept looking at it, every few minutes. Made nervous by my own imagination. Feeling the tremblings of fear as people jostled by one another, far too close to that drop-off. We took our seats, and I had to turn in mine, crossing one leg over the other to accommodate my purse. It's awkward, I suppose, sitting half in and half out of a seat, just so that he doesn't have to relinquish my hand. He pulled me further in, shifting my elbow beneath his ribs so he could lean against it. I felt the muscles in my neck and shoulders twinge. That ever-present ache that months of physical therapy couldn't budge. It's always my left side that hurts. That stiffens up. My left shoulder that sits higher somehow, pulled out of whack by tense muscles. It's always my left side he tugs on. My left hand he holds. My left arm held out for him to weigh down into.
I see those women who carry purses, the sort that just have handles and no long strap. They walk about with their arm curved up and out, holding their bags on the forearm. I used to buy purses like that, but I never carried them that way. I'd let them hang from my hand, or swing them over my shoulder. Now my hand is always full. I wear a crossbody bag, or a low slung shoulder bag. My hand always free for his, my arm curved up and out for him to lean on. My hand faces up, his palm down. His forearm presses down into mine. I can feel my muscles cramp and my elbow lock. Every once in a while, I have to wrestle my hand away...straighten my arm...listen for the crack in the joint...and then he grabs it back. In crowded stores, my right hand comes up, covering his in mine. Tapping against the back of his hand when we have to turn or when we take the stairs. A signal, as though he's blind. A pay attention, follow my lead.
At the town bonfire this year I saw when a pack of boys from his school first spotted him. They stopped mid stride, reassembled, closing ranks. One boy pointing us out to the others. Heads on swivel. A sneer. And then it happened. One looked down and saw our hands, his in mine. Another pointed finger. A giggle, or guffaw, or whatever that noise is that bursts out of teenage boys when they find a weak spot to poke at. I stepped to the side, putting my body in front of his, blocking their view and his. Hoping he hadn't noticed. His grip tightened. Fingernails dug into my skin. He shrank into himself. As if. 6'3" and trying to shrink. I spoke up. Too loud. Overcompensating. Fake cheery voice desperately pointing out the ice carving we'd just passed. Pulling him along with me to escape, to stand in front of the ice carver's station and stare blindly, waiting for the moment to pass. I was faking it. And he knew it. And played along. Pretending that he, too, was suddenly oh-so-interested in the ice.
My hand is his lifeline. It's the solid ground in the middle of a swirling tornado of sensory overload.
We sat in our high up seats. Looking down at the crowd below. Squinting at the stage. The speakers, at full blast, distorted the sound. His earplugs hardly made a dent in the constant throb. Sometimes he'd lean close and push his ear down into my shoulder. Then my right hand would come up and cover his left ear, crossing in front of us both, pressing firmly into his forehead. Between acts there was a speaker. Sponsorship ministry. Touching story. Reminding us of the child we sponsored. Jose. This past fall we received a letter from Jose's home church letting us know his family situation had changed. That he was no longer in the program. That his parents had found work. We listened to the speaker, but kept our hands down. No sponsorship this time. No flagging down one of the volunteers to get a packet. Our belts are tight enough right now. Then music again. Powerful, and uplifting...but louder than loud. His body rigid, then slouching, cycling through overload and exhaustion. Stage lights dimmed, and a spotlight in the center. The singer speaking about his music. Speaking about his son. Speaking about the heartbreak of parenting through a diagnosis. His son diagnosed with juvenile diabetes. Feeling hopeless. Defeated. The "why God, why?" moments. He stood there, speaking to an audience of thousands about why he wrote the song he was about to sing. He stood there, talking about how weak and useless he felt. How all his efforts to be a good parent were rendered meaningless in the face of something he couldn't fix.
I sat there, and the air felt changed...charged. Everything around me a blur but the sharp outlines of my son and I. His hand in mine.
Full volume again. Those speakers blasting. The song begun. My son pushing his index finger into my thumb. Pushing the nail into my thumbpad. Hard. Hard enough to almost break the skin. The sharp pain of it enough to drown out the noise. I wanted to wrest my hand away. I wanted to shake him loose and stop the hurting. But the quiet part of me down deep left my hand there. It said to me "Shhh...sit still...don't move a muscle...let it be...", and I breathed deeply, in through the nose-out through the mouth. Counting 1-2-3. In. Out.
I knew what was happening. He needed input. Something to cancel out the pain of the volume and lights. Pressure to focus on. Pressure to center on. Pushing that fingernail hard and deep to find resistance.
I bit the inside of my cheek and pushed back. Forcing my thumb down further so that his fingernail, seeking resistance, could find it.
He moved his finger across my thumb, down into my palm, then back again. Pushing and scratching.
I closed off that part of my brain. Hand gone numb. Focused on the flashing lights and pulse of the bass guitar.
On the car ride home, the words came back to me. A familiar language. The heartbreak of discovering you are not enough. The painful lesson of your own futility.
He had spoken about that heartbreak and pain. And further. He'd put into words his heart's plea for a miracle. His journey through hopelessness and hope. He'd said aloud "I want it gone".
But I never did.
Isn't that odd?
Never. Never once. Never for a year or a month or a day or a minute. Never for a moment have I ever wanted it gone.
Oh, I have wanted much. I have wanted easier and logical. I have wanted understanding and translation. I have wanted to be a better mother. To be a better parent. To be a better advocate. I have wanted to know it all and prevent it all and protect it all.
But never once have I ever wanted it gone.
Not even in the first moments, when the phone rang and the voice shattered my reality. Not even then, when the word AUTISM glared so bright it seemed to blot him right out of existence. Not when his teeth broke skin on my shins at his special-needs preschool, when I tried to wrestle him away from the train table. Or when he screamed for hours instead of sleeping. Not when we couldn't leave the house without him getting violently sick to his stomach from the sensory overload. Or when I had to turn down every single invite.
I never wanted it gone.
What I wanted, was to be better at helping him.
To be better at understanding.
At protecting.
At parenting.
I never wanted him to not have autism. It never even crossed my mind. It was always just a piece of his whole. Nothing to get mad at, or about. Just part of. Like an extra sense. Me, here, limited with just 5 or 6: sight, hearing ,taste, smell, touch, intuition. And he, right next to me but on another level with something extra...some part of him pinging away at a higher frequency...more aware, more connected...and overwhelmed by it all.
I wanted to be better at not having autism myself. At being the translator. The go-between. The foot in both worlds.
I wanted to be whatever made it easier for him to cope with the symptoms.
So I became myself. I became stronger. More observant. Highly alert.
I gave him my hand to hold.
Arms to hug and squeeze oh-so-tight. Legs to bite, and kick, and walk. Shoulder to lean on and yank on. Thumb to gouge and whisk away tears. Every part of me of some use. My voice to soothe or defend. My head to predict and prevent. My eyes and ears to assess and avoid. All of me, surrounding him. A buffer. A blockade. A door.
And my wants increased. I wanted to keep him safe. Make him happy. Give him security and stability. I wanted to open up his whole world as wide as it could go. I wanted him to be free to be himself, autism and all.
I guess I'm lucky. I'll never have to look back, ashamed at myself, for wanting to will away his autism. For bargaining with God to "make him better". Nevermind that...no guesses...I am lucky. I knew even then, without the actual knowing it, that his autism was going to propel him forward. That it was intended. That he might need my helping hand. That helping him was my purpose. That...
He is exactly who he is supposed to be.
I see those women who carry purses, the sort that just have handles and no long strap. They walk about with their arm curved up and out, holding their bags on the forearm. I used to buy purses like that, but I never carried them that way. I'd let them hang from my hand, or swing them over my shoulder. Now my hand is always full. I wear a crossbody bag, or a low slung shoulder bag. My hand always free for his, my arm curved up and out for him to lean on. My hand faces up, his palm down. His forearm presses down into mine. I can feel my muscles cramp and my elbow lock. Every once in a while, I have to wrestle my hand away...straighten my arm...listen for the crack in the joint...and then he grabs it back. In crowded stores, my right hand comes up, covering his in mine. Tapping against the back of his hand when we have to turn or when we take the stairs. A signal, as though he's blind. A pay attention, follow my lead.
At the town bonfire this year I saw when a pack of boys from his school first spotted him. They stopped mid stride, reassembled, closing ranks. One boy pointing us out to the others. Heads on swivel. A sneer. And then it happened. One looked down and saw our hands, his in mine. Another pointed finger. A giggle, or guffaw, or whatever that noise is that bursts out of teenage boys when they find a weak spot to poke at. I stepped to the side, putting my body in front of his, blocking their view and his. Hoping he hadn't noticed. His grip tightened. Fingernails dug into my skin. He shrank into himself. As if. 6'3" and trying to shrink. I spoke up. Too loud. Overcompensating. Fake cheery voice desperately pointing out the ice carving we'd just passed. Pulling him along with me to escape, to stand in front of the ice carver's station and stare blindly, waiting for the moment to pass. I was faking it. And he knew it. And played along. Pretending that he, too, was suddenly oh-so-interested in the ice.
My hand is his lifeline. It's the solid ground in the middle of a swirling tornado of sensory overload.
We sat in our high up seats. Looking down at the crowd below. Squinting at the stage. The speakers, at full blast, distorted the sound. His earplugs hardly made a dent in the constant throb. Sometimes he'd lean close and push his ear down into my shoulder. Then my right hand would come up and cover his left ear, crossing in front of us both, pressing firmly into his forehead. Between acts there was a speaker. Sponsorship ministry. Touching story. Reminding us of the child we sponsored. Jose. This past fall we received a letter from Jose's home church letting us know his family situation had changed. That he was no longer in the program. That his parents had found work. We listened to the speaker, but kept our hands down. No sponsorship this time. No flagging down one of the volunteers to get a packet. Our belts are tight enough right now. Then music again. Powerful, and uplifting...but louder than loud. His body rigid, then slouching, cycling through overload and exhaustion. Stage lights dimmed, and a spotlight in the center. The singer speaking about his music. Speaking about his son. Speaking about the heartbreak of parenting through a diagnosis. His son diagnosed with juvenile diabetes. Feeling hopeless. Defeated. The "why God, why?" moments. He stood there, speaking to an audience of thousands about why he wrote the song he was about to sing. He stood there, talking about how weak and useless he felt. How all his efforts to be a good parent were rendered meaningless in the face of something he couldn't fix.
I sat there, and the air felt changed...charged. Everything around me a blur but the sharp outlines of my son and I. His hand in mine.
Full volume again. Those speakers blasting. The song begun. My son pushing his index finger into my thumb. Pushing the nail into my thumbpad. Hard. Hard enough to almost break the skin. The sharp pain of it enough to drown out the noise. I wanted to wrest my hand away. I wanted to shake him loose and stop the hurting. But the quiet part of me down deep left my hand there. It said to me "Shhh...sit still...don't move a muscle...let it be...", and I breathed deeply, in through the nose-out through the mouth. Counting 1-2-3. In. Out.
I knew what was happening. He needed input. Something to cancel out the pain of the volume and lights. Pressure to focus on. Pressure to center on. Pushing that fingernail hard and deep to find resistance.
I bit the inside of my cheek and pushed back. Forcing my thumb down further so that his fingernail, seeking resistance, could find it.
He moved his finger across my thumb, down into my palm, then back again. Pushing and scratching.
I closed off that part of my brain. Hand gone numb. Focused on the flashing lights and pulse of the bass guitar.
On the car ride home, the words came back to me. A familiar language. The heartbreak of discovering you are not enough. The painful lesson of your own futility.
He had spoken about that heartbreak and pain. And further. He'd put into words his heart's plea for a miracle. His journey through hopelessness and hope. He'd said aloud "I want it gone".
But I never did.
Isn't that odd?
Never. Never once. Never for a year or a month or a day or a minute. Never for a moment have I ever wanted it gone.
Oh, I have wanted much. I have wanted easier and logical. I have wanted understanding and translation. I have wanted to be a better mother. To be a better parent. To be a better advocate. I have wanted to know it all and prevent it all and protect it all.
But never once have I ever wanted it gone.
Not even in the first moments, when the phone rang and the voice shattered my reality. Not even then, when the word AUTISM glared so bright it seemed to blot him right out of existence. Not when his teeth broke skin on my shins at his special-needs preschool, when I tried to wrestle him away from the train table. Or when he screamed for hours instead of sleeping. Not when we couldn't leave the house without him getting violently sick to his stomach from the sensory overload. Or when I had to turn down every single invite.
I never wanted it gone.
What I wanted, was to be better at helping him.
To be better at understanding.
At protecting.
At parenting.
I never wanted him to not have autism. It never even crossed my mind. It was always just a piece of his whole. Nothing to get mad at, or about. Just part of. Like an extra sense. Me, here, limited with just 5 or 6: sight, hearing ,taste, smell, touch, intuition. And he, right next to me but on another level with something extra...some part of him pinging away at a higher frequency...more aware, more connected...and overwhelmed by it all.
I wanted to be better at not having autism myself. At being the translator. The go-between. The foot in both worlds.
I wanted to be whatever made it easier for him to cope with the symptoms.
So I became myself. I became stronger. More observant. Highly alert.
I gave him my hand to hold.
Arms to hug and squeeze oh-so-tight. Legs to bite, and kick, and walk. Shoulder to lean on and yank on. Thumb to gouge and whisk away tears. Every part of me of some use. My voice to soothe or defend. My head to predict and prevent. My eyes and ears to assess and avoid. All of me, surrounding him. A buffer. A blockade. A door.
And my wants increased. I wanted to keep him safe. Make him happy. Give him security and stability. I wanted to open up his whole world as wide as it could go. I wanted him to be free to be himself, autism and all.
I guess I'm lucky. I'll never have to look back, ashamed at myself, for wanting to will away his autism. For bargaining with God to "make him better". Nevermind that...no guesses...I am lucky. I knew even then, without the actual knowing it, that his autism was going to propel him forward. That it was intended. That he might need my helping hand. That helping him was my purpose. That...
He is exactly who he is supposed to be.
